Thursday, June 21, 2012

Day 4 update

Well the computer I am on doesn't seem to want to cooperate with me, but at least I have access. I know that everyone is asking how Ava Grace is doing, so I was going to try to take a minute or two and tell everyone what I can. First of all, she is here!!!! Praise the Lord. He is good. He is allowing us time to spend with our angel and watch her little expressions. She has quite a few to say the least. I have learned that she is not a fan of momma's singing. Amazing what these little ones have to endure while we are carrying them. :)We are on day 4 now and she is in her little warmer, snug as a bug. She has been taken off of her CPAP mask and has been downgraded to oxygen. YAY!!!!!  She is holding her own. She has had a ECHO of her heart and a ultrasound of her head. Until they know the results of the test, they do not know if surgery is a possibility. We are in no hurry to have to make the decision of surgery or not. Surgery poses so many additional complications that honestly I am not ready to deal with. I know that right now she is happy and pain free exactly as she is. Ava has some PHENOMENAL nurses. They keep me in the loop when I am unable to be there with her. We are so blessed to have such great medical staff looking over her while we are away. I was discharged today so it is even harder to keep it together. Even though I am across the street, it is so hard thinking I am so far away from her.

She is a fighter! She had a couple of times today that her oxygen sats got really low (while we were standing there). I can't tell you how scary that was. She became real still and her color turned grey. Wow!!! She rebounded once her O2 was increased and she was stimulated. Then she started crying. To hear her cry was amazing. She does not cry like a "normal newborn". Her cry sounds like a newborn kitten. It is so precious. She turns 5 shades of red and opens her little mouth only to hear a little squeek of a cry. I love it. Sometimes I just want to pinch her to hear her cry (not really), but I love to see her in active mode. I never knew a little angel of 3 lbs could turn my world upside down like she has. When I got to hold her for the first and only time so far, I fell head over heels. I could not stop crying the entire 10 minutes of complete bliss. She did so great. Her O2 was perfect and at the lowest setting possible. She layed there listening to my heartbeat and I just glowed. I wanted the whole world to see how perfect she is through my eyes. Each moment without her in my arms is torture. I am trying to hurry now, so that I can go see her.

I pray that every family that has ever gone through anything even remotely like this is granted with peace and understanding. I pray that there is no hatred or resentment. I pray to the Lord each day that my known friends that are struggling are given hope and encouragement, as each one of you have done for me. I can not tell you how much all of your prayers mean to me and my family. We are truly amazed at how complete strangers have banded together for our perfect princess. She is continuing to fight and I know that the Lord hears our prayers loud and clear. Please keep them going up and we are keeping afloat. The Lord may bend me, but he will not break me. Through Him all things are possible. I will post some  pictures below of random times. I love you all and will update again as soon as I can.

Tuesday, June 12, 2012

A little down, but not out

Today my mother-in-law and myself traveled to UMC to preregister for my c-section on Monday. The day is nearing quickly. Miss Ava Grace has been moving so much today. It was so reassuring. UMC had no idea why I was there, who my dr was or even would be, what was wrong with my baby, etc. I was so distraught. It truly worried me. After many phone calls and research, they found me (wrong spelling of my last name) and why I was there. WOW! I sure hope they have their stuff together more on Monday. After registration we went to have my maternity pictures taken. This appointment was long passed due. For anyone in the market for some fantastic pictures, please look up Jennifer Rutledge Photography. She is located in Brandon, MS. She is also on facebook, so you can look her up. I have to admit that she has gone above and beyond to help me in this crazy time of my life. She is part of a organization called Now I Lay Me Down To Sleep. It is a organization that recruits local photographers to take pictures of babies in the NICU for free! Jennifer actually offered to do my maternity pictures for me as well. She was even going to fly to my house, so I didn't have to drive to her. What a sweetheart. Of course it rained, so all of her outside ideas were laid to rest and we shot in her studio. I'm still so happy with the opportunity to even get to do them. I normally do NOT like or have had any desire to do maternity pictures, but this is a different situation and I am grasping for any memory I can have of my little angel. If she proves all the dr's wrong and pulls through, then I have more than a memory. Jennifer is also coming to the hospital to take pics of AG and of the family as they have their first encounter with AG. As she says, "capturing the things that you will not be able to see because of your section". All I can say is there are angels on earth. My MIL and I went to babies-r-us to buy a present for someone (not me) and it was such a sad moment. As we walked into the store, my immediate attention went straight ahead to the preemie clothing section. First let down. I browsed the store only to end up in the "keepsakes department". Any other pregnancy, I would have passed it up, but I couldn't. I ended up buying keepsakes to capture her handprint and footprint. By the time I finished looking through all the momentos, I was sad. Once again, feeling defeated, we left. A song came on the radio that reminded me of my brother. I turned it up and explained the logic of comparison to my MIL. The song was my brother to a "T". Man I miss him. He's been gone for over a month, almost two and there is not a day that goes by that I don't think of him. He is the background on my phone, so he is never far from my mind. Although at this time, I am trying not to think of him. He always said, "Ava is going to be our miracle baby". That makes me smile. Oddly enough, my mamaw pointed out that "the Lord never takes anything away without giving us something in return". Her logic was, "when your grandfather died, shortly after Cody (my nephew) was born. After your daddy died, Landon was born. Now, after Doyle died, Ava Grace will be born. She will be just fine. She is going to make a miracle out of doubt." I love this wise woman and I hold what she says near and dear to my heart. I pray that she is right. A friend of mine, Linnea, posted a saying on my wall that basically says that "we will never be the same once we pass this storm". This is a scary and hopeful saying. I am scared that I will be a much sadder person if Ava's birth doesn't go as I pray it will. It is hopeful because "maybe I will be a stronger person as well". Maybe I will not take any little thing my kids do for granted anymore. Maybe I will be grateful for the little and big things and life and the honest people the Lord puts in it. I already have a greater respect for my husband. His strength is my strength. He never reads my blogs, so this is not me being sweet. :) I honestly love this man and I think that the whole experience has made us different people, but closer. Maybe this is another reason we are enduring the anticipation and uncertainty. I can't tell you guys how much I appreciate my family. They are extremely supportive. My sis in law is my right hand and has volunteered to do all the things that I don't know if I will be able to. Thank You!!! I love all of you (even the ones who don't read this haha). Right now, I am sitting here in awe, watching my baby girl move in my belly. This is the first time I am actually seeing her move across my abdomen. It is so fantastic!!!! I hope I can catch this on video so I can share it. Shirt on, of course. My little girl is such a fighter. Maybe if I play the Rocky theme song, she will start boxing. I would love it! I promise to send you all your bracelets as soon as I get them. According to the tracking, I should receive them tomorrow. I will deliver them asap. I would love for everyone to wear them on Monday when she is born and say a little prayer for her. The Lord hears all of our prayers and maybe, just maybe he will get bombarded with the prayers for this little angel and give us a miracle! Thank you, everyone!!!!

Wednesday, June 6, 2012

Less Than Two Weeks!

EEEEEEE........ (As my friend Sarah says)Such an exciting and scary time all together. We had our last dr's appointment yesterday. There really was no change made to the scheduled section. Miss Ava actually cooperated with the dr's yesterday and let them take all the pictures of her heart that they wanted. Made me wonder if she was mine there for a little bit. We met with the anesthesiologist to review my previous sections and discuss the possible causes of complications. We did not come up with any concrete reasons, I'm sad to say. Looks like we will be winging it again and praying for the best. Bryan and I also took a tour of the NICU. We were initially told that since we would not be intubating her that she would go to the regular newborn nursery. Well, as of yesterday, that did not seem to be correct. We were told that she would be taken to the NICU, since the nursery does not provide oxygen, IV therapy, feeding tubes, etc. if needed. So when we went through all the do's and don'ts of the NICU and stepped inside, instantly I lost my breath. This kind of upset me as I knew what to expect. I have worked in a smaller NICU before and I knew what complications I would be looking at. Ironically, the baby that we stood beside 80% of the time had just had surgery for spina bifida. How weird? This was a little different as this infant probably weighed 7 pounds and my little angel only weighs 3lbs. 2oz. She is growing slowly. I seriously doubt that she makes it to 4 pounds. I thought wow, is this a sign that we SHOULD do the surgery on her back? Then a friend of mine was telling me about a lady that wanted to talk with me regarding her son had SB surgery a little while back and now he is 4 months and super smart. "Is this another sign?" I thought. In case you don't know me that well, it is safe to say that I am a little superstitious and look for signs. Not crazy signs, just listening and looking for ways that the Lord may be talking to me. Anyway, as of right now, we are just waiting for her arrival to see about the surgery. Neither of us want her to be in a incubator for 3 weeks fighting to hang on when we can be holding and loving her if this is her only time on earth. Not to mention, that at 3 months she will need to be evaluated for heart surgery. Bless her little heart, she is such a trooper already. Right now we are going to focus on the here and now. We are scheduled at 6am June 18th for her arrival. We pray she arrives kicking and screaming (in a good way).In other news, let me tell you about all the positive things/events my little miracle has brought into my life recently. First of all, we (Ava and I) had a pamper party the other day. My awesome family and friends spoiled me. I received the awesome "FIGHT FOR AVA GRACE" bracelets, prayer bracelet, Ronaldo bracelets, Spa gift certificates, etc. A dear friend gave me a printed song with a knitted crown. I cried. All of these gifts were so fantastic and heart felt. Ava's little crown will be way to big for her tiny head, but hey, what princess wouldn't like a large crown? I try to stay optimistic and pray that she will grow into it one day. It is so hard at times. I never think that I should have gave up on her when I had the chance. She is my little angel and she will always be my little girl. I must admit that a couple of other people have touched me in such a deep way. A friend of mine has a husband that is in Afghanistan. He is scheduled to return soon for a short period and then back to fighting he goes. This is super bittersweet. Thank you for this by the way. Anyway, he wants to take a few bracelets to his troop in Afghanistan. Men wearing pink and fighting for our country and my little girl!!! Wow!? Now my miracle is being supported in another country. How wonderful and touching. This literally made me cry and believe it or not, I don't do that very often. My other friend saw a picture attached to my facebook page of a billboard with a picture of a little girl with Trisomy 18 that just turned 2. It said something to the effect of "Fight for Trisomy 13 & 18" and "Happy Birthday...". The little girl on the billboard touched a life of a marketing rep and they produced a billboard for her 2nd birthday. The friend of mine asked if she could sponser a billboard for Ava Grace. **Breathless**. She wants to put it in Jackson, where AG will be born. Wow, another person advocating for my miracle. These are some of the most touching gestures I have received yet. The irony is that before Ava Grace, I always saw the bad in the world and all the self absorbtion that it produced. Now, the Lord is opening my eyes to all the people that want to help and show their goodness and selflessness. Maybe this was the purpose or the reason the Lord chose me. See, once again, looking for a sign. For all of my fellow Trisomy moms, I absolutely must tell you about Icing Smiles. Lauren told me about this company that partners with local bakeries to produce a "dream cake" and other special occassion cakes for your terminally ill child or siblings. All for free! They normally don't take a case where the child is not born yet, but they took Ava! The Sweetery Bakery in Cleveland has partnered up with Icing Smiles to do Ava's dream cake. There work is phenomenal! An example is sweet Hayden's cake. It was truly a dream cake. My plan is, when AG comes home, to have them make the cake and have a "celebration of life" party. She will be the present! I am super excited. You can see their work on facebook. All I can say is wow.Please continue to pray for, not only Ava Grace, but her dad and her brothers. I do fear that they will take any bad outcome really bad. Landon already brags about his little sister, talks to her in my belly, sings to her and has truly never lost anyone this close to him. He and my brother had just started getting close when he passed away. I watched him at the funeral and it upset him a bit. I can't imagine what goes through a child's head in a situation like that/this. The neonatologist says that he is too little to go into the NICU to see her, so I am on needles praying for him to be able to see her (doing good of course). He tells me all the time, don't have her while I'm at my daddy's house. :) My sweet husband, well he is my rock and even though I think I could skip him across the water sometimes, I love him with all my heart. He has already been through so much by losing his sister at a young age, it breaks my spirit to think he would have to relive losing that kind of love again. Guarded optimism is my route of choice. I choose to be positive until I absolutely have to be negative. Thank you all for your love, support, and prayers for my family. We are truly blessed to have such supportive friends. We draw our strength off of your prayers and positivity. Please keep it up and we will keep lifting up our gift of each day to the Lord. He is the ultimate physician and He has the last call.
Ava Grace at 35 weeks
"Fight for Ava Grace" with Ava in the belly on one side and "Hope for Hayden" with Hayden (smiling) on the other side.
My sweet hostesses from my pamper party. Aren't they beautiful!?
Mr. Hayden at his 1st birthday with his "Sunshine" cake.
This has been my saying for the past few days. Adopted from a supporting friend.
See her sweet smile....
Ice cream cake from the girls at work :)

Another day with you!

My dear Ava Grace,

Today was a better day. It seems as the further I get away from our last appointment, the better I am. Today you have been a active little thing. Kicking me all day. I love it! You keep on communicating to me with your little feet. We go back to your next appointment at the end of the month, but not before we go a couple of times to take more pictures of you! :) I love that I get to go every week to see your sweet face on the screen. Mrs. Christy takes lots of pictures and measurements so we can watch you grow! You are so long, by the way. Tall like your dad and skinny, unlike your mommy. I am half way through my pregnancy and you are not even a pound yet you little buggar! Mommy is willing you to be fat. Not many mommies would wish this on their baby. I am not like other mommies though. You will find this out and beg for a "normal" mommy. I can't wait to see your sweet face this week on the screen! I love you. Sleep well baby girl.